Friday, November 30, 2018

Nikoletta Erdelyi is a project coordinator at York University who works with academic advisors in all faculties to improve the way they support students. She’s also a writer, actress and artist. One of her art pieces is in an exhibit called 18 | eighteen at Holland Bloorview. It pairs the grey, sterile X-rays of her childhood with a whimsical poem about her vibrant life outside the hospital. Befriending Skeletons is part of an exhibit in which young adults depict moving from pediatric to adult care as a person with a disability. The exhibit was curated at the Koffler Centre of the Arts and will honour the International Day of Persons with Disabilities on Dec. 3. Please visit the hallway on the hospital’s first floor between 3-5 p.m. on Monday. BLOOM: How did you get the idea to mix X-ray images of you in childhood with a poem about the kind of girl you were?

Nikoletta Erdelyi: I’ve been writing for as long as I can remember. A big part of my childhood involved medical appointments and surgeries and being in the hospital. When you’re a child, the hospital is an absurd place. The scents, the sounds and the words you don’t understand. It’s a petrifying feeling. The X-ray room is especially daunting because it’s dark, the table you lie on is cold, and there are very scary images of your bones. You know you’re different from the rest of your peers. I wanted to combine that feeling of the absurd with something a bit more fun and whimsical. BLOOM: It’s very powerful because it contrasts your memories of the ‘smell of the operating room’ and ‘masked strangers who lull you to sleep,’ with a spunky girl who insists her cast be yellow to match her princess dress.

Nikoletta Erdelyi: That was exactly my intention. Those images of the X-ray and operating rooms are still very vivid to me. I still have dreams about that time in hospital. As a child, you don’t understand what they’re going to do to you. It really is terrifying and a lot of it can feel like a horror film. Even though surgeons are wonderful human beings and accomplish fantastic results that improve people's lives, as a child it's difficult to comprehend that you're viewed through a medical lens.

BLOOM: And the clinical X-rays don’t in any way match your personality as a girl.

Nikoletta Erdelyi: That’s what I was going for. When you’re a person who strays from most people physically, others have perceptions about you and what your life is like. If an average person were to view those X-rays, they might perceive my life as difficult, dull and even painful. I was hoping to capture with the poetry that I’m someone who is full of life, who has hopes and dreams, and who is a happy person, a full person.

BLOOM: Do you have any advice for how health professionals could make children's hospital experience less frightening?

Nikoletta Erdelyi: I was born in Hungary, and a lot of my surgeries and hospitalizations took place there. The hospitals were in old buildings and they didn’t have funding for things like child-life specialists or family-centred care. When I moved here and was at Holland Bloorview and SickKids, it was no longer as terrifying. There were bright open spaces and Mickey Mouse on the wall and everything was so personalized. I remember at SickKids they had me choose which flavour I wanted in my anesthetic mask. Little things like that made a big difference.

BLOOM: It seems like most of your medical intervention happened as a child. In your poem, when we reach the end, it is focused on going to university, moving to the city, getting a job and falling in love. We don’t hear about any more surgeries or hospital stays.

Nikoletta Erdelyi: That’s correct. Most of my surgeries happened as a child. My spine was a big concern, but it stopped shifting when I was a teenager, so I no longer needed to come for these regular appointments. One of my biggest fears was having spine surgery.

BLOOM: What was your move into adulthood like then?

Nikoletta Erdelyi: Of course I was apprehensive. To leap into adulthood is scary for anyone. But I had so many strong supports behind me I was ready for what was next. I went to university, and within a year I moved out to my own apartment. I dated. I worked.

For me, the transition was pretty smooth because of the support systems I had at Holland Bloorview and with my friends and family. By the time I was 17 I became comfortable with the fact that I was different. I do use a wheelchair, but that’s okay. Ultimately, what matters the most is my resilience and passion. That was me coming to terms with the fact that I didn’t need footsteps because I had something more powerful—my wheelchair is my wings.

BLOOM: Yes, that’s a beautiful image at the end of your poem of you taking off. I know you’ve written a book. Can you tell us about that?

Nikoletta Erdelyi: It’s called The Electronic Sticky Notes That Saved My Life. It’s a story about my life when I was 19. In a lot of ways it’s about the transition to adulthood, about becoming yourself and accepting and finding yourself. At the time, I’d gone through a very difficult breakup. It’s about how I rebuilt myself and moved on from that and came to terms with my femininity as a woman who uses a wheelchair. I won a grant from the Ontario Arts Council to write it but the most challenging thing is finding an agent. So it’s a work in progress.

BLOOM: I read that you performed in a play called Borne that was directed by Judith Thompson, who also wrote a play called RARE about living with Down syndrome.

Nikoletta Erdelyi: Yes. Borne was about nine different people who use wheelchairs. That was an exciting time, talking about my experiences growing up differently and how I became the person I am.

I’ve written a one-person play called Ghost Tales that I’ll be performing at Soulpepper next year.

BLOOM: Wow! What is it about?

Nikoletta Erdelyi: It captures some of my lived experiences in romantic love and other important milestones of my mid-20s. It explores heavy topics, including tokenism, affirmative action, societal concepts of love, and the moral pedestal that people with disabilities are often placed on. I want to capture the idea that we are all capable of good and evil. I'm all about making peace with absurdity, and can't wait to bring this piece to the stage next spring!

BLOOM: What was creating Befriending Skeletons like for you?

Nikoletta Erdelyi: It was a very cathartic experience for me. It was like taking skeletons out of the closet, literally. I had found those X-ray images in my mom’s closet, and I had no idea they were there. It helped me to put an end to that chapter in my life and realize how far I’ve come.

BLOOM: What do you most love about writing?

Nikoletta Erdelyi: I think it transcends day-to-day language and the way we speak. Through poetry especially we can capture universal emotions. There’s a type of magic in that for me.

BLOOM: What advice would you give parents and professionals who support youth with disabilities?

Nikoletta Erdelyi: I would encourage them to promote independence and autonomy, because so often when you have a disability you live with your parents and health professionals want to be there every step of the way to support you. But at the same time, it’s important to find yourself, and figure out what you want outside of those expectations and pressures.

One thing that helped me was I went to all of my medical appointments alone since I was 15. It helped me become a strong advocate and to figure out what I still needed to learn. I would encourage parents and professionals to listen and to encourage clients to speak up for themselves.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.